The Best Father’s Day Gift A Special Needs Dad Can Give Himself
By Tony Bombacino
Hi, my name is Tony Bombacino and I have a special needs child. My son AJ is 6 years old – he has never taken a step, never spoken a word and is not potty trained. He has a feeding tube and receives 100% of his nutrition via his tube, he’s had tens of seizures and he has many, many sensory issues that result in random and frequent bad behavior outbursts (think screaming, hitting, kicking, pulling hair, repetitive humming, chewing on the carpet or chair, and so on). He doesn’t sleep through the night, he doesn’t have any first place medals or trophies for baseball or basketball or football or soccer or the spelling bee – and quite frankly, AJ isn’t the son I thought I would have someday. I could go on and on telling you what AJ isn’t, what he can’t do, what he hasn’t achieved and how hard it is to be his Dad some days, but I’d much rather tell you about who he IS – and who he has helped me become.
Over the years, and even in some of my previous blog posts I’ve talked a lot about my journey as a Special Needs Dad, I’ve talked about my son AJ’s special needs and challenges and how they led my wife Julie and I to create Real Food Blends. I’ve talked about how being an SND requires a different kind of “strong” and I’ve often mentioned the importance of being able to share your emotions openly and not being afraid to cry – but after some reflection over the past few months I realized I haven’t often thought or written about the importance of acceptance — acceptance of your child and your reality as a SND, and the importance of allowing yourself to not be ruled or haunted by expectations or “what you thought” your child would be like or what the world continues to tell you your child should be like or what things will look like 10-20 years from now; so I thought I would touch on that here.
You see, there’s this feeling I get. This feeling is like nothing else I’ve ever experienced, like a sudden jolt of electricity (not the good kind, like watching an amazing lightening storm, but like being struck by a million bolts of lightening) and a tsunami of empty sadness at the same time. I lose my breath just thinking about it and feel like I’m going to crumble to my knees in the moment. I want to cry, but I want to be strong. I want to face reality, but I want to be hopeful. I want to protect him, but I want to enable him to stand on his own. I want to accept him, but I want to change him. Maybe some of you know this “feeling” I speak of? I never actually know when it’s going to hit me. After years of being an SND, I don’t really see all the “what is wrong with him or that poor kid/dad” stares anymore, I don’t always notice the other kids the same age as my son that are walking and talking and playing sports – or just simply eating a meal with their mouths on their own. I no longer dwell on him not being able to talk or having to change his diapers at age 6 on a daily basis anymore. I don’t. BUT… in the times that I do come out of my “this is my reality and just suck it up and put your head down and be a great Dad and stop worrying so much and plenty of people have it worse than you and AJ” mode and actually absorb a stare or a comment or a simple reality like I’ve stated above, it rocks me to my core and I don’t wish this feeling on anybody.
But then, just like that, things changed. It was after spending a long weekend alone with my son last summer. For many reasons, it’s tough to be solo with AJ for long periods of time and it’s easy to let feelings of frustration, tiredness, and angst overshadow the good stuff. After the first day/night, it seemed like a typical long weekend together — he was up 4-5 times overnight and I slept about 3 hours total, he was having lots of tantrums during the day, it was tiring taking him to stores or to the carwash or just out in the yard. Without realizing it, all of his challenges had become my focus. What he couldn’t do/say, had become my hidden source of angst. And then Day 2 of this long weekend came. He slept through the night and woke up with in the best mood and with the biggest smile on his face (almost as if he knew I really needed his love and joy). I decided to take a 30 min drive to get some muffins from our favorite bakery – we listened to music on the way there and back and danced and laughed in the car. We came home and he continued to stay attached to my every move. We were laughing and playing our way through the day. I decided we should have an impromptu dance party. Instead of Barney or Elmo, I cranked up some old school music that I loved – and he unexpectedly loved it even more. He proceeded to spin in circles on the floor, smile, laugh and wave his arms to the beat – I got down on the floor with him and it was simply an amazing moment I will NEVER forget. Since then, things have been different for me. I still have really tough days and moments, but during that weekend, during that dance party, I finally realized I had been focusing on everything my son wasn’t and missing out on everything he is!
This Father’s Day when you see the other Dads playing sports with their kids, watching them have a simple conversation or meal together, or coloring a picture or playing in the pool – resolve to push the envy/pain/frustration/fear/anger back down and focus with all of your might on that one simple look/laugh/time of day when you feel more connected to your special needs child than any other parent could ever understand and that only you can explain – and resolve to accept your child just the way they are – in that moment and in all the days ahead. They deserve it – and so do you!
Happy Father’s Day!
About Tony Bombacino
Tony Bombacino is the Co-Founder of Real Food Blends, makers of 100% real food meals for people with feeding tubes. He is husband to Julie and Dad to Luca and AJ. When he isn’t working or chasing the kids around the house he enjoys cooking, fishing, traveling, golfing and rooting for the Bears, Cubs and Bulls.